Se han realizado las siguientes actividades:
1. Difusión
- Campaña de difusión de "Las 10 Señales de Alerta de las Inmunodeficiencias Primarias son la llave para Diagnóstico: https://iniciativaalas.org/senales-de-alerta/ Se elaboró cartel con participación de las 11 asociaciones que integran Iniciativa ALAS. y se envío a cada organización en los 9 países integranes.
- Se mantien la difusión a través de las redes sociales de ALAS en facebook y twitter
- Se han realizado postales con información sobre Covid 19 y manejo de las Inmunodeficiencias Primarias.
- Se participó en Declaración Conjunta internacional sobre COVID 19 https://iniciativaalas.org/declaracion-conjunta-sobre-coronavirus-sars-cov-2-covid-19/ que fue difundida por diversos medios y asociaciones.
2. Incidencia Política
- Se inició campaña #TuVOZcuenta que incluye:
a) Realización de 46 entrevistas a familias y pacientes con algún tipo de inmunodeficiencia primaria para elaboración de sus historias sobre inmunodeficiencias primarias
b) Desarrollo de plataforma digital con las historias https://iniciativaalas.org/tu-voz-cuenta/
c) Se encuentra en elaboración documento de propuesta de política pública con base en las historias.
Se invitó a la Asociación Argentina para las Inmunodeficiencias Primarias a ser parte de Iniciativa ALAS. Actualmente participan 11 asociaciones de 9 países de Latinoamérica.
The following activities have been carried out:
1. Dissemination
- Dissemination campaign of "The 10 Warning Signs of Primary Immunodeficiencies are the key to Diagnosis: https://iniciativaalas.org/senales-de-alerta/ A poster was prepared with the participation of the 11 associations that make up the ALAS Initiative And it is sent to each organization in the 9 member countries.
- Keep broadcasting through the ALAS social networks on facebook and twitter
- Postcards with information on Covid 19 and management of Primary Immunodeficiencies have been made.
- Participated in the International Joint Declaration on COVID 19 https://iniciativaalas.org/declaracion-conjunta-sobre-coronavirus-sars-cov-2-covid-19/ which was disseminated by various media and associations.
2. Advocacy
- #TuVOZcuenta campaign was started, which includes:
a) Carrying out 46 interviews with families and patients with some type of primary immunodeficiency to prepare their stories about primary immunodeficiencies
b) Development of digital platform with stories https://iniciativaalas.org/tu-voz-cuenta/
c) A public policy proposal document is being prepared based on the stories.
Argentine Association for Primary Immunodeficiencies was invited to be part of the ALAS Initiative. Currently 11 associations from 9 Latin American countries participate.
Thank you very much for your support, we are happy to share the first ALAS Initiative report.
1. We held the first regional meeting with the participation of 10 Latin American associations of eight countries (México, Colombia, Ecuador, Perú, Chile, Brasil, El Salvador, Nicaragua, to raise awareness about the situations petients experience due to lack of access to timely diagnosis and treatment of gammaglobulin
2. We established an alliance with Latin American Society for Immunodeficiencies - LASID for the advice of training workshop.
3. We develop educational materials for digital platforms (facebbok, twitter).
4. Screening of the movie "Do Something, the Jeffrey Modell Story in Nicaragua, Colombia, México and Ecuador.
5. Campaign for access to gammaglobulin treatment in Brasil, Nicaragua, Ecuador, El Salvador, y México.
Links:
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